The day I went to the GP to say I was terrified that my daughter had anorexia, things happened pretty fast. The doctor recognised the urgency even though my daughter was not particularly underweight, and she sent off a referral to child and adolescent mental health services (CAMHS) that very day.

So far so wonderful. But the address for CAMHS had changed and the referral letter didn’t get there. That lost us one week. Next I discovered that the CAMHS team read and prioritised referrals just once a week, and that day had just passed. I also learned that if my daughter was not considered high priority the waiting time was … two years! Every other day I begged the receptionist to please tell the clinicians of my daughter’s rapid deterioration. Waiting without information was agony.

Compared to most people, we were incredibly well served. After a few days of me pestering the receptionist, we got an appointment. Many eating-disorder stories (see for instance Bev Mattock’s book ‘When anorexia came to visit‘) are a catalogue of delays and incompetence.

Hurray for England’s new “commissioning guide”

A fair share of the horror stories I hear come from England. So how wonderful is it that on 3 August 2015 NHS England issued the most well-informed, high-standard instructions we could wish for. And no wonder. It was written by some of our top experts. What is remarkable is that expertise from researchers and clinicians is actually becoming government policy. It’s all in a 102-page document entitled “Access and Waiting Time Standard for Children and Young People with an Eating Disorder. Commissioning Guide” which I’ll attempt to summarise for you here.

(Update: we now have some results on the ‘waiting time’ bit, which I’ve summarised for you here.)

Big changes for England

It is the job of health service commissioners (the officers responsible for providing and regulating the health services for the local population they serve) to make it all happen in every area of England.

” It is expected that additional funding will be used to build either new
teams and services, or be used to build upon existing community based services that are
either already compliant or where the funding is being used to ensure compliance.“

Next, commissioners actually have to do this (and maybe you can help them?)

The document is aimed at health service commissioners. They now have to develop a “Transformation Plan” for their area, in collaboration with – ooh – children and their families, among others! So friends, given how much you care about all this, and how much expertise you’ve reluctantly gathered about eating disorders, how about you put yourself forward to be consulted?

Early intervention: one week for “urgent” cases, and four weeks max for “routine”

By 2020, children and young people referred for an assessment or treatment of an eating disorder will access treatment within a maximum of four weeks (for “routine” cases), and one week for “urgent” cases.

Health services are not expected to achieve the waiting time standard right away, but each year there will be a tightening of the screw. Timings will be documented and monitored.

” The CLOCK STARTS when the request for an eating disorder assessment is received and logged [by the Community Eating Disorder Service], regardless of the agency making the request.Note that the clock does not stop until treatment is delivered.”

What’s “urgent” and what’s “routine”? And is it possible that GPs might hold things back? Here’s how it works.

If you’ve self-referred to the Community Eating Disorders Service, the clock starts right away. The same if “school nurses or medical, pastoral or other members of staff” in educational settings have decided to refer a child (they can do so, while informing the family, in spite of the family not sharing the same level of concern).

If you’ve first gone to a GP, they have to “contact the eating disorder service via telephone or electronically following discussion with the child or young person and their parents or carers, as soon as an eating disorder is first identified. The [community eating disorder service] should log the date of referral and the CLOCK STARTS at this time.” So no snail-mail. I imagine that there continues to be a weakness in the system, if the GP assesses someone to not have an eating disorder, when really it’s the specialists who are best placed to work that out. Parents, remember that the GP’s opinion need not be an obstacle, as you can self-refer.

As soon as the eating disorders service has received a referral, they “must classify the urgency of the case within 24 hours”. And to do that: “All require telephone or in-person contact to be made with the child or young person and the parent or carer on the same day to clarify risk”. This is where they classify the risk as “urgent” or “routine”.

“If the child or young person is deemed to be at high risk, i.e. in need of urgent medical stabilisation or at high psychiatric risk”, the service “must arrange an in person assessment within 24 hours.”

“If the pathway has been classified as urgent, the GP should be notified and the child or young person should be seen by the [eating disorder service] within 5 days from the clock starting”

“If the pathway has been classified as routine and the child or young person has not seen their GP within the past 2 weeks, they should be directed to their GP for a consultation within the next 2 days. The [eating disorder service] should liaise with the GP by day 5 following the clock starting.”

The best treatment we currently have

From 2016, ” Clinicians will need to continue to offer NICE-concordant treatment.”

(NICE is the UK body that sets the standards on treatments, based on research and cost-effectiveness.)

This is actually not new. The NICE guidelines should have been getting followed ever since they were published. I hope that what is new is that compliance will be monitored.

And since May 2017 we have some great, revised NICE guidelines for eating disorders.

So what therapy will England have to offer? Here goes:

For anorexia:

“Treatment should include specialised community family interventions for anorexia nervosa […] In addition, there is emerging evidence to suggest that a specifically adapted form of CBT may be effective in anorexia nervosa in young people .”

For bulimia:

“… and specifically adapted forms of CBT for bulimia nervosa, in particular CBT-E. Both CBT and family interventions for adolescent bulimia nervosa have some support.”

I explain these two types of interventions (special family therapy and forms of CBT adapted for eating disorders) here.

This is major stuff. Why? Because up to now, well-meaning CAMHS staff have offered whatever approach seemed right to them. Even if there was no evidence it worked. At age 10-11, my own daughter was given one-to-one talk therapy (mostly psychodynamic) that, unsurprisingly, went nowhere. She also got CBT, which sounds good, except that for eating disorders it’s a special form of CBT you need – and that is only valid for a specific group of older teens and adults.

I really hope that everyone will understand “specialised community family interventions” to refer to family therapy as developed and tested by Dare, Eisler and others in the UK (Eisler and some of his colleagues are authors of the document), and Lock, Le Grange and others in the US. I’m hoping that it’s understood that we’re not talking about family therapy in general. Our updated NICE guidelines should make it clear. I’m hoping that services will choose to get their training either from Lock and Le Grange’s Family-Based Treatment model (with or without investing in the costs of certification), or from Eisler’s team at the child and adolescent eating disorder service of the Maudsley hospital. Currently, I know of eating disorders services going for one or both of these routes, and that’s just great.

I have a collection of accounts from parents whose children experienced truly awful care in the hands of mental health clinicians. How is it possible that a child with anorexia can be told, ‘It’s okay if you don’t want to eat high-calorie foods’? Sometimes parents find the ‘therapy’ so deeply harmful that they resort to their own DIY form of family-based treatment.

The CAMHS team who first saw my daughter did many good things, but they were dealing with kids with autism and anxiety or depression — anorexia was just one of their topics. They didn’t know that there was stuff they didn’t know. My daughter continued to deteriorate and ended up in hospital for eleven months. Then we got luckier than most people in this country: we got family-based treatment from Scotland’s experts, and our daughter was on the road to recovery.

There’s a growing view that generic mental health professionals cannot treat eating disorders as well as those who have specialised. So I’m whooping and cheering as I read the document’s detailed requirements for the ‘community-based eating disorder service for children and young people’ (CEDS-CYP).

“The most cost-effective treatment of anorexia nervosa in children and young people isreported to be delivered by a community-based eating disorder service as opposed togeneric CAMHS […], yet these are not uniformly available throughout thecountry.”

Commissioners will have to make sure the service is sufficiently well staffed, trained, supervised, to deliver to target. The multi-disciplinary team will include:

“staff trained in the delivery of evidence-based psychological interventions for eating disorders (to include CBT/CBT-E and targeted family interventions)”

and also staff trained to supervisory level in the same approaches.

That sounds to me like quality.

Nearly anyone (including the parents) can now refer a young person to the specialists

GPs are no longer the gatekeepers to specialist services. Sufferers or their parents can now self-refer. I am whooping with joy. I have heard so many stories where a child has become terribly ill because a GP disregards the parents’ worries and waits for the cancer (I mean, the eating disorder) to get worse before it’s considered worth treating.

” Each service should have clear, accessible contact details on a website, which areeasy to find via main search engines, with clear instructions in appropriate languages onhow to call the service, send an email or complete an online self-referral form. The referralshould be logged, and the CLOCK STARTS at this time.”

So let me make this clear. Parents in England: your health service now has to change their systems fast, so that you can refer your child directly to the eating disorder service. And as soon as you contact the service, the clock starts: treatment must start within 1 week or maximum 4 weeks, depending on whether it’s “urgent” or “routine”.

A 7-day service

The community eating disorder service “should have a 7 day week service as their goal”.

Hospitalisation where needed

” Inpatient admission should be considered where there is high or moderate physical risk”

On the other hand, the priority is treatment within the community (which means, mostly, at home).

“Where severity is high and risk considered manageable in the community, NICE-concordant intensive community (to include home treatment) or day treatment careshould be offered by the CEDS-CYP [community-based eating disorder services for children and young people].”

Ignorance is no excuse

Not only are specialists to start treating young people fast, it’s now their job to make sure everyone knows of their service:

“The CEDS-CYP [community-based eating disorder services for children and young people] must ensure referral pathways are known by all local relevant professional groups likely to come in contact with a child or young person who may have an eating disorder. This will include GPs and primary care workers, paediatric staff, CAMHS teams, schools and colleges, and other relevant professionals working with children and young people.”

Is this as exciting as I think it is?

I hope my brief take on this NHS England commissioning guide has got you as excited as I am. There’s plenty more – the guide is 102 pages. I’m writing in August 2015. By 2020, this post should look quaintly antiquated to families in England. We’ll talk about the bad old times.

What about the rest of the world? The UK has the advantage of having a national health service, so standards can be set, as is the case here, for the whole of England. Some countries have it harder — there are no state-wide standards, and each area, each health centre or even each doctor, goes about treating eating disorder their own way. Standards only improve if individual care providers are good at talking to each other.

To some extent, this is what is happening in Scotland, I think. More and more clinicians who treat eating disorders voluntarily attend training (James Lock has been travelling over to train in FBT), they network, and there’s now a voluntary steering group, so standards go up… but it’s still a postcode lottery. Two of the worst stories I have are from Scotland.

Does your country already do better? If so, would you post for other readers here?

Or can the NHS England document serve as a model for where you are?

And what about adults suffering from an eating disorder?

This document is about children and adolescents. The new standards will greatly reduce the risk of them becoming long-term adult sufferers. But what about those struggling to get treatment, or even to get diagnosis, as adults? Services for over-18s hugely need improving. Some eating disorders units may re-organise to cater for all ages, and perhaps that will benefit everyone. On the other hand, the treatment approach (and the parent’s role) is very different if the patient is a newly diagnosed teen, or an adult who has been suffering for many years. So let us remain vigilant.

Is there any work on producing an Access and Waiting time standard for adults? Apparently not. I am told there is not the political will which made the standard for children and adolescents happen.

Achieving these standards: see the example of one trust

Watch my interview of Lydia Goodrum and Dr Sarah Maxwell, of the Norfolk and Suffolk NHS Foundation Trust. It’s 45 minutes, so shorter than going to a conference (!) If you only have a few minutes, there’s a short summary early on. And there are menu links all along the top.

And see how well England’s doing already in 2016-17

65% of youngsters in the ‘urgent’ category are starting treatment within one week. That’s a remarkable fast turnaround for a health service that was failing so many of our children.

Related

10 Replies to “England’s eating-disorder treatment standard: a model for the rest of the world?”

Quoting you above “Where severity is high and risk considered manageable in the community, NICE-concordant intensive community (to include home treatment) or day treatment care should be offered by the CEDS-CYP [community-based eating disorder services for children and young people].” – what does “home treatment” mean exactly? Does this mean that my child is entitled to day treatment care? At the moment he is only getting one visit to CAMHS per week. He is hiding food in his room and only eating if I am present. (I am based in Oxfordshire). I am a single working parent, becoming more and more depressed as I read that I have to do the Maudsley method, and wonder how I can afford a full-time carer to help – as this would be required, since I have a mortgage and can’t give up my job (and don’t want to otherwise I would lose my sanity). This is ruining my life and I am so full of despair.

Yes, I can see how very hard this is for you, as you wonder how on earth this is supposed to work when you’re bringing in the family income. Your question and despair are very relevant and you are right to look at this face on, considering practicalities, finances, and your sanity as well as your son’s needs. It’s the only way to find a realistic way forward for an illness which can’t be fixed overnight.

Do ask around on parent forums – you may pick up some practical ideas from other full-time working single parents. For instance some have managed to stay at home for a few weeks (on sick leave or compassionate leave?) to address the most intense re-feeding stage, roping in help from friends/family in order to not go crazy, and then back at work when a lower level of support does the trick. At that stage they may continue to help their child at mealtimes with Skype/Facetime, or the school provides enough supervision to make it viable.

From the text you picked out, it really does look like day treatment care has to be on offer, so your CAMHS has to set this up. Which I can imagine is a huge job if it doesn’t already exist, so it won’t happen overnight. So that’s not going to help YOU, I bet.

I see the standard says “Where […] risk considered manageable in the community”. With your current setup it sounds like risk is not manageable at home. If your son cannot eat without you, then he’s not safe if you’re not there at every mealtime. So either you and CAMHS find a way to realistically change your setup, or you and CAMHS brainstorm another way to safeguard your dear son’s life and treat the illness. No blame, no shame for anyone. If it was easy you’d all have found a solution by now. I’m sure everyone wants to see your son safe and smiling again. The job is to go beyond the panic and work out a way forward.

You cannot be coerced into doing the Maudsley method, and it doesn’t look to me like the new NHS England’s standards intend to impose family treatment — it’s really about making it available as a method of choice. The approach can’t work without a parent being both able and willing to do it. Note that evidence-based treatment at home can also be CBT-E, which requires a lot less parental involvement. That’s mentioned in the standards. CBT-E may be suitable at some stage in your son’s recovery (if he can’t eat without someone being with him, sounds unrealistic for now).

So I suggest you discuss all this with CAMHS to look for a workable solution. If all parties are honest and non-blaming (your practical and emotional parameters are not up for judgement), you should be able to find a way forward which may not be perfect or ideal, but still assures wellbeing for you and for you son.

Indeed, Donald. I am so angry and broken-hearted about what’s been happening with Nelly, and far too many others in England and world-wide. I really hope these standards bring real change, and that also they serve as a model for other places in the world.

My d was recalled on her cto eleven days ago, although high risk she is still sat on a peadiatric ward, she has had two IP beds pulled this week and no correspondance off nhs england. Is this timeline in place now she is 15. Really appreciate your input im tired of fighting for what she deserves

That sounds really though for you, and for her. The standards I describe on this page are something all Trusts have to work towards right now. And in any case, the NICE guidelines should help, and they’ve been in place for years. Phone the CAMHS clinical director maybe? Or the Trust’s complaints manager? Note that a Paediatric ward CAN sometimes be the best place (and remember I don’t know any details of your situation) IF the ward is well coordinated with you and with CAMHS, so that your d is kept safe and fed. When this system works it’s because CAMHS is then ready to support the family to continue at home… If this is not at all right for you, maybe it’s for your GP to fight your corner? To provide funds for your d to go into some appropriate unit, if the closest is not appropriate or has no space? Beyond this, I’m afraid I don’t (yet?) understand the system to suggest anything else. Join a parent’s forum and ask others?

I have read your article about eating disorders and the expected changes with great interest. I had an eating disorder during my teens (I am now substantially older!) and I was referred to CAMHS where i was subjected to an appalling service. I attended counselling where I was told I had to weigh in every week – when told this I informed my counsellor that I would intentionally lose weight if he was going to weigh me because it was unbearable to me to imagine him seeing my weight increase or stay the same. In fact I had just managed to get to the point where I wasn’t weighing myself 10times per day. His response was ‘that’s how we do things here’. And so my health deteriorated rapidly. My mum decided to come to a session with me and as we left she said she couldn’t believe how patronising and unkind the whole service was. At which point we sought external help – psychotherapy, not CBT which merely looks at changes in behaviours and surface level thinking patterns. I am now fully recovered and have just completed my training as a Transactional Analysis Psychotherapist. This kind of therapy offers a deep insight into what is going on underneath the eating disorder….the behaviours of an eating disorder are an external manifestation of the unimaginable pain people experience when suffering so much. Therefore, if CAMHS continue to focus on the behaviours, I fear that many more young people will have to continue to live with the devastating thoughts and feelings of an eating disorder for many years after they finish ‘successful’ treatment according to the NHS. I have heard many similar stories to mine recently….of teenagers who have become significantly more ill at the hands of the NHS and that is in 2016 – it seems little has changed. I can only hope that one day we move away from CBT and look to finding a therapeutic approach that will provide long term work to help young people to unravel their pain and heal properly.

Thanks for sharing your experience – a good reminder of how much we need high quality services.
Since you were in this dreadful situation, we have had the benefit of quite a bit more research, and I have a chapter on it which is available to all here (I am busy updating it, so by end of July 2016 it should be even clearer where we’re at in terms of validated treatments).
I think the standards are excellent because they reflect what we know from research – this is our best chance of successfully treating the majority of young people with an eating disorders. Then, as no single approach works for everybody (perhaps even the best therapist in family-based treatment would not have been the answer for you), once an eating disorders service has tried the approaches for which we have the best evidence, they can move on to other approaches. I am so glad you found a psychotherapy that worked for you, and I share your desire that you and so many others could have got effective treatment within the NHS. Congratulations on your TA work, and I wish you much success with it.

Eva, I think there are a lot of improvements going on with more clinicians making an effort to understand what they are dealing with. However, even if waiting times are shortened, there can still be a lack of urgency around starting getting weight gain going/stopping binge/purge behaviours.
I totally sympathise with the parent above who is on her own and is the wage earner in the family. FBT is far from ideal for a single parent family unless there is a committed team doing the ‘kind insistence’ that the child complies with the parent’s wishes and expectations that the child eats.
The main element missing within most places is flexibility – a short stay in a specialist setting so that regular eating and acceptance of eating can be established so that then the family can take over/patient weight gain can happen at home is still not the norm. And once the weight gain process has started – the specialist hospitals are often unwilling to discharge until several months have gone by and weight is more or less restored. This is not necessarily the best way of going about things but flexible and repeated short stays to keep pushing the patient along the recovery path are never considered – but may actually work. I appreciate there are the constraints of money but often certain approaches or ways of doing things or programmes which are used take priority over a patient-centred individualistic approach.
However, there ARE improvements and serious attempts to provide better understanding and support for these terrible illnesses, so we are moving in the right direction.

Caution please (Disclaimer)

I’m a parent – not a clinician. This site is not a substitute for professional advice. Pay attention to your instincts, read widely, speak to other parents, and most importantly, keep your clinicians in the loop.